Sandilee,
Some MDs are prescribing Axona for their AD patients. (I don't believe all insurance is covering it.) It's been available since early last year. Some in the AD community prefer to take Axona (an MCT formulation) rather than coconut oil. There was a Forum member Ben who posted last year or the year before about the differences between coconut oil and MCT oil.
Robin

Thu Jun 24, 2010 8:27 pm

DNS

Joined: Tue Aug 03, 2010 9:13 amPosts: 8

Re: Coconut Oil

This thread about coconut oil (and the related ketone bodies) reminds me a lot of the movie "Lorenzo's oil". In that the parents of a kid with a fatal and quickly progressing nero-degenerative disease go off on a quest to find a cure. With work and luck on their side they do find a cure.

I'd like to feel the same is possible about LBD.

Others on this thread are putting up some very valid questions and problems:-how do you know if what you are doing is helping or not (unless you find a miracle cure, you really won't be able to tell if what you are doing is slowing the disease or its symptoms- not unless you have some good objective metrics to use)?-even if it does help, unless you participate with the research/medical establisment, it isn't going to help more than just your loved one

Given that AD PD LBD are degenerative and ultimately fatal it does make sense that people would go off and try things on their own (it is a deseperate situation, so grasping at straws is better than doing nothing). It would be nice if there was some way of incorporating their "self experiments" into some kind of data framework (so that we could help the quest for a cure progress). I'm not sure what the anwser is, but it would be nice if we had some way of registering these "ad-hoc" trials such that researchers could get some meaningful data out of it.

I'd be not-inclined to suggest coconut oil to people without one of these conditions (it would probably put one at risk of heart attack or stroke). The related ketone bodies... I'd also say should be avoided unless you have one of these conditions (I'm not a doctor but I believe ketone bodies probably put stress on your kidneys and liver)

On the other hand, if you do have one of these condition, why not try some of these things.-Curcumin/turmeric (on another thread) in reasonable amounts is probably only benifical (it might do nothing for AD/PD/LBD but it does have benifits for other causes of mortality). -Coconut oil / ketone bodies might not be great for an ordinary person but given the desperate situation maybe trying them is justified.-Cinnamon, as it helps to regulate blood sugar (and I'm not aware of bad effects) might be in the same category as turmeric. Of course, I wouldn't use more than 1/2tsp per day, which is what some people were suggesting just for controlling blood sugar spikes.

Does anyone have any ideas for how to do ad-hoc trials so researchers can get something out of it?

DNS -You raise many interesting points and have given us something to think about. I don't agree with the notion that it's better to grasp at straws than do nothing, and I don't think the opposite of "grasping at straws" is "doing nothing." "Grasping at straws" would not be my preferred approach but everyone can make his/her own decision about the treatment regimen for loved ones.Robin

Tue Aug 03, 2010 3:54 pm

DNS

Joined: Tue Aug 03, 2010 9:13 amPosts: 8

Re: Coconut Oil

Quote:

You raise many interesting points and have given us something to think about. I don't agree with the notion that it's better to grasp at straws than do nothing

Yeah, different people have different views. Even if something is done with my Dad along the lines of the "nutra-ceuticals" I'm not saying "Hey everyone you should try this too.". Also I don't call the shots on dealing with my Dad (my Mom does).

I just feel (rightly or wrongly) that LBD (or whatever my Dad has, and it does fit at least some of the pattern for LBD) doesn't seem to have terribly good medications yet. I can't get in his head but what I see from the outside is pretty bad.

So, I'm in a similar mindset as the desperate poor person who plays the lottery (not a good thing for them to do)- try something, maybe my number will come up. Except the way I see it there is no real downside.

On the other hand, I'd like it to be more than just a stupid gamble. I'd like for it to contribute somehow to the understanding and treatment of the disease.

That would mean we'd have to create metrics and other things. I'm not going to be able to get my Dad in a PET scanner (he's not leaving the nursing home he's in, let alone sitting in some scanner for any decent length of time) so that is out. I suppose some external mental function tests could be done (though I think he is beyond reading... so it would probably have to be along the lines of reflex, coordination, eye movement type stuff).

So I'd like to coordinate with some researchers on trying to get some data out of my Dad. If it doesn't help him at least it might illuminate what is and is not going on with the disease.

I feel like I'm betraying him by just letting him painfully rot inside himself. I feel that I should be doing something to help.

Tue Aug 03, 2010 4:50 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Coconut Oil

The hopelessness does make us feel helpless, doesn't it? And if we are nurturing, caring people who like to help others, it leaves us with such a sense of frustration. I spent many months researching my dad's symptoms, meeting with drs. and nurses, reading, reading, reading, and I guess I've just given up on finding anything that will help him. All it did for me was to get me more upset as I watch him decline to the helplessness of a newborn baby, and knowing that nothing will make his symptoms any better or make him any more content. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Actually there are quite good medications for dealing with the symptoms of LBD but there are no medications to delay the progression.

Have you discussed your quest for research data with your father's neurologist or psychiatrist?

Tue Aug 03, 2010 5:49 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Coconut Oil

Not sure to whom the question was directed, Robin. If it was for me, when we've discussed LBD or other of his possible diagnoses, they tell me that I seem to know more about LBD than they do. They know I do a lot of reading about all the possibilities. They have given up on him, I guess due to his overall health and age. I have more meaningful discussions with drs. and nurses here and some at Dartmouth.

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Tue Aug 03, 2010 6:34 pm

DNS

Joined: Tue Aug 03, 2010 9:13 amPosts: 8

Re: Coconut Oil

Quote:

Actually there are quite good medications for dealing with the symptoms of LBD but there are no medications to delay the progression.

Have you discussed your quest for research data with your father's neurologist or psychiatrist?

I don't have my Dad's medical history in front of me, so I'm speaking off the cuff.

I know my Mom (who was the primary and almost sole caregiver before she had to put him in a nursing home (my brother and I don't live in the same state as our parents...)) has been leery about meds. A bunch of things he's tried have had only negative side effects and seemingly no benifits.

Naturally (as a result) there are things that we haven't done an adequate trial for (because she'd pull him off at the first sign of bad side effects- which might not have been actually from the med but the semi-random walk the disease takes), plus we've been operating in a metrics void.

So she and I are a bit skeptical/leery about trying new meds. The appealing thing about nutra-ceuticals is that probably the negative side effects would be slight. I also feel that the understanding of this and related diseases is pretty poor- so maybe comming in from another angle might shed some light on what does and doesn't work.

Also I do hope that maybe this problem is (at its root) a metabolic one. If so, that would mean some neutra-ceutical approach could correct the problem (either as a direct shunt which seems to be the suggested theory behind the 'obviously not a cure but maybe helpful for some people' coconut oil/ketone bodies; or by prompting the body to adjust its own production of chemicals).

Obviously, there are metabolic aspects to the disease- but it is unclear if those are a cause of the disease, or a result of it.

I have not discussed this with my Dad's neurologist, that could be one avenue to persue. If he doesn't have research contacts at least he might help draft metrics.

If my Mom agrees to go along with some kind of trial I'd like to be able to get some kind of meaningful information out of it, rather than just some anecdotal account.

My mom is a diabetic who mismanaged it for many years, so she is now insulin dependent. She has been with me for a year now and her A1C's are 5.9 and we've considerably reduced her insulin. I follow the zone diet which is essentially sticking to carbs that are low glycemic, lean protein and good fat.

For a sweetener I use agave syrup, but not all agave syrups are the same. It needs to be produced below 118 degrees in order to remain low glycemic. This processed version is more expensive and not available in the regular grocery stores. I use a brand called volcanic nectar.

Trader Joe's recently started carrying a sugar free low carb chocolate that has a net effective carbs of 1 g. It doesn't effect her blood sugars, so I'm thrilled with this for her sweet tooth.

Because of the diabetes and the fact that she has had several TIA's, she has a high stroke risk. Over the course of the last year she has lost 35 lbs (diet and exercise) and is now a healthy weight, which helps keep her blood sugars lower. Her cholesterol levels are very good.

Managing her diabetes has been my big focus because I thought that was the key to her living out her remaining years in good health. Now with the LBD diagnosis, I'm more concerned about it, but of course very concerned about keeping her blood sugars regulated.

I had thought that coconut oil was a bad fat. However, it seems that now there is some debate over that. I'm tempted to try that fudge with the good agave syrup as I know she would LOVE it, but I'm fearful of raising her cholesterol or clogging her arteries. She already has some plaque in her arteries, but it's not enough to require any treatment. I just don't want to throw that over te

Last edited by stepping_up on Fri Aug 27, 2010 7:28 pm, edited 1 time in total.

Fri Aug 27, 2010 7:25 pm

stepping_up

Joined: Thu Aug 26, 2010 7:11 pmPosts: 31

Re: Coconut Oil

my question for you that have tried the coconut oil is whether you have your LO's cholesterol checked and if there were any changes in it after introducing the coconut oil?

stepping_up,Is there debate over coconut oil and its very high level of saturated fat??Robin

Sat Aug 28, 2010 11:38 pm

stepping_up

Joined: Thu Aug 26, 2010 7:11 pmPosts: 31

Re: Coconut Oil

robin wrote:

stepping_up,Is there debate over coconut oil and its very high level of saturated fat??Robin

One of the posters mentioned that new research was saying it might not be that bad, so I did a google search on the term coconut oil and good fat or bad fat. I got a lot of hits that suggested it may not be as bad as once thought. For example, this one

Next to a severe dementia, my biggest fear with my mom is a major stroke. I'm too skeptical to give her coconut oil without knowing if it has altered cholesterol levels.

Mon Aug 30, 2010 7:34 pm

FiatLux

Joined: Thu Jan 14, 2010 2:40 pmPosts: 95Location: California

Re: Coconut Oil

Regret I did not see this thread until today. Yes, I am grabbing at straws, but everything else is failing! Off to the market to buy a fat ... bottle of coconut oil!Kyrie Eleison! [thank you pat]Roxanne

_________________My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?

Update : I shared the research I found originally with some doctors. One just recently copied me on an email she wrote recommending the coconut oil. She also commented, "...began using coconut oil myself over a year ago â I bought a cook book written by a chef who converted all her recipes to coconut oil and Iâve been trying the same. So interesting â at least itâs something simple we can do for our brains â the change has also improved my thyroid functioning [Rx decreased twice]"

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